Ah, maybe one day celiacs will never have to pre-plan a meal at a restaurant or go anywhere we want –including the greasiest local bar and grill we can find.  Maybe after a round of golf be able to have a  beer and a burger and fries with no worries at the “19th Hole”.  We can all dream right?  This last decade I think many wishes came true, whether we knew we had those wishes or not.  But there are a few things that many people expected would progress in this decade (which is ending in just a matter of hours), that just simply haven’t.

During a recent survey earlier this month, 94 people responded with answers to the question “What would you have liked to see happen for celiacs in the last decade?” I thought I knew the answer hands down…but I was surprised.

Top reason:  Gluten-Free Labeling Disappointment

“I wish they’d get that darn food labeling bill taken care of!”  18% percent  agreed with that respondent’s comment.  They said the fact that gluten-free labeling hasn’t happened for both food and drugs is a huge frustration.  This is the top concern of the survey.

The celiac and gluten-sensitive communities have been anticipating a law for volunteer gluten-free food labeling from the Food and Drug Administration.  The Food Allergen Labeling and Consumer Protection Act of 2004 promised guidelines for voluntary gluten-free labeling by 2008.  That deadline has most certainly come and gone.  As one respondent wrote, “Allergen bills did not happen fast enough –  got stuck in government red tape…”  Another person said,”I’d love to see GREAT food labeling bills instead of the wishy-washy stuff we have now.”

A portion of these respondents were particularly frustrated with lack of labeling on over-the-counter (OTC) and prescription medicines.  FALCPA states the allergen labeling happen “to any food that is labeled on or after January 1, 2006.”  No mention of medicines. One respondent wrote, “Pharmaceuticals, especially generic, contribute to a lot of problems we have in using medication.  The generic problem of not being able to find out what the medications contain is almost overwhelming and in fact impossible at times.”  I think we’ve all been there.  It is true.  If you get a generic prescription on the weekends you’re stuck with taking a chance or waiting.

One saving grace is news from Perrigo earlier this month.  Perrigo is a huge supplier of generic OTC medicines.  They say they’re going to start labeling gluten-free products in 2010.  But that doesn’t help with other medicines that are out there.

#2 Better Education in Medical Community

Behind food labeling was doctor and/or medical community education with 10% of respondents thinking this would have come along much farther in the last 10 years. “Education,” one person wrote. “I am amazed at how many physicians have very little or no knowledge of celiac disease.”   Another person commented,”Better awareness that some celiacs do not present ‘classic’ symptoms.”  A third person specifically mentioned gluten-sensitivity, “…nearly 1 in 4 is gluten-sensitive but not celiac, and many are told they can eat gluten if the celiac test is negative.  Doctors need to be educated more!”

I’ve mentioned before, my daughter probably wouldn’t have been diagnosed as early as she was except for one article our family practice doc happened to read at the right time.  He had blown me off once, but by the time she’d lost 10% of her body weight he was listening and trying to figure out what was wrong.  But the bottom line is, if doctors-in-training don’t learn more about this in med school it may not be on their radar once they see you in a clinic.

Another subnote to this, which I have discussed here on my site and I just saw another good article on celiacdisease.com, is that doctors don’t know enough about celiac disease, because big pharma doesn’t have a pill for it.  That whole deal fries me — don’t even get me started …you can actually hear me rant about it more in a previous post I did.

A Cure & Awareness Tie for Third

4% wanted a cure and another 4% wanted better awareness.

This is where I am most surprised.  I thought for sure a cure for celiac would have been the top spot on this survey.  Comments on this were brief, “A magic pill that allows gluten containing foods to be eaten.”  Another person wrote, “Greater strides in an antidote…in case we ingest gluten.”

Why wouldn’t this be at the top?  That’s what I would have put.  But here’s my theory as to why it’s not.  Expectations on a cure have been managed to a point.  No one has promised or expected a cure to come during this last decade.  But we most certainly did expect the finalization of the gluten-free labeling by the FDA.  Since 2004 they’d promised this would be done.  It is now overdue by about 18 months, with no major end in sight, is extremely disappointing.  That is why I think the answers turned out the way they did.

When people talked about awareness in this survey – they more specifically mean public awareness and general knowledge of celiac disease and the gluten-free lifestyle. “More public awareness,” one person commented.  “It would be nice to not have to explain what celiac is to the vast majorities.”  “Celiac disease on Oprah,” another person said.

Other concerns mentioned

3% of the respondents were also concerned testing:  A few were lumped into this category: most wanted nationwide testing of celiac disease, another wanted FDA approval on an at-home test, while another wanted “better detection methods”.

3% would have liked to have seen better knowledge at restaurants.

2% mentioned the need for unity among celiac organizations.

Summary

I want to reinforce this post isn’t about whining or complaining.  So many strides have been made in the last 10 years it’s incredible!

But I also understand that people who have had this disease for decades must feel that the last 10 years has been the best when it comes to eating gluten-free. They might be wondering What are you complaining about?

This is just a gauge of a celiac community that sees so much potential in raising awareness about this disease that’s quietly making so many people so ill — for years at a time.  They might agree it we may need to continue to make some noise over the next 10 years!

Speaking of the next 10 years, check out my post Monday on what the celiac community is looking forward to in the decade!

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